A journey in finding that we're not alone

Menu

Monthly Archives: May 2013

Post navigation

This past week has been quite full on. I was very nervous going into it. Late nights, early mornings, eating on the run, different cities and tight deadlines do not make for an ideal situation for me. But, I got through it. I am amazed that I made it through to 5pm yesterday.

As part of my condition, my blood sugar levels are not great. This means I need to eat regular meals in order to save myself from completely crashing. Unfortunately, this week I was forced to have a combined lunch/dinner at about 3pm and hope for some form of snack to be made available at 7.15pm. The only meal I regularly got was breakfast, which, as someone who’s gluten intolerant, this is not an easy meal to fill up on or even get. So making it through to the end of the work week on very little food was in itself a huge achievement.

Next was the late nights and early mornings. Thursday/Friday was the worst. We finished work at 9.15pm and had to set our alarms for around 4.50am in order to be able to get up in time to get our flight back to Melbourne from Brisbane. Upon arriving in Melbourne I had about 1.5hours to finish off some work in the office, then it was off to a client meeting (over lunch time so again no food). As soon as the meeting was over, it was onto a train and back home – the whole time I continued to work until around 5pm.

As soon as I sent off my last email my body and brain stopped. There was no getting going again. I’d completely worn myself out and my body and brain finished up their duty for the week.

Now, I face the challenge of finishing off an essay. My mind is mush, my eyes are droopy and not a god-damned thing I’m reading is making any sense.

Whilst the name clearly indicates fatigue being a symptom, there are a multitude of symptoms that make up the disorder. Every sufferer battles with their own unique combination of symptoms. This is the main set of my unique list…

Fatigue

Headaches

Light headed

Itchy skin

Sinus pain

Nausea

Chills/sweats

Muscle/neck pain

Heat/cold intolerant

Lack of concentration

Short term memory loss

Shortness of breath

Sensitivity to food

Flushed face

Hair loss

Chest pains

Cough

Insomnia

Disruptive sleep

Unrestorative sleep

Anxiety

Depression

Lowered immune system

So if you ever see me and I don’t look so well…this list is probably why.

This blog is more of a personal mapping of my journey with ME/CFS. Having ME/CFS I can’t be sure that I’ll blog regularly, but at least I’ll have somewhere to go if I feel the need to write about my experiences.

I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.

ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.

Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.